The mere fact that the United Nations, against all the fears of the inflation of human rights, adopted the Convention on the Rights of Persons with Disabilities, demonstrates that we, people with disabilities, have been lacking equal recognition in our societies. Disability, according to the social model, comes from the barriers created by the inadequate societal response to the person's impairment. Barriers result in social exclusion: persons with disabilities are socially excluded persons. Adults with intellectual and psychoscial ( mental health) disabilities often have a legal status less than of an adult person. Legal incapacitation through guardianship and other forms of substitute decision making deprive us from the capacity to act. Attitudinal and legal barriers need to be removed along with physical, communicational and informational barriers. There is no easier, more "Royal" way to implement the UN CRPD.
Disabling laws need to be replaced by enabling ones. This will require tremendous legislative work, and in that endeavor persons with disabilities need to play a decisive role as demanded by CRPD. Enabling laws then need to be used as frameworks for societal action with the view of full inclusion of all persons with disabilities, in all fields of life.
My recent experiences both in Hungary and in India make me cautious: the involvement of persons with disabilities through their organisations, while necessary, will not be sufficient to get closer to the CRPD objectives. Let me reason why I think so, and then let me come up with proposals on how full inclusion can be achieved.
Social exclusion, among other things, has also prevented persons with disabilities to be equal part of the public sphere. The public sphere is an area in social life where people can get together and freely discuss and identify societal problems, and through that discussion influence political action (http://en.wikipedia.org/wiki/Public_sphere). Jürgen Habermas, in his historical analysis of the public sphere (Habermas, Jürgen (German (1962) English Translation 1989). The Structural Transformation of the Public Sphere: An Inquiry into a Category of Bourgeois Society. Cambridge Massachusetts: The MIT Press, p 36), identified three principles that govern the institutionalization of the public sphere: disregard of status of the person; domain of common concern enabling the sphere to problematize areas that hitherto have not been questioned; inclusivity to enable everyone to participate.
None of these has been typically the case for persons with disabilities. Legal incapacitation is the clearest example for how the disregard of status principle is breached: persons under guardianship are legally deprived of being part of the discourse. More subtle forms of the violation of the disregard of status are rooted in the prejudices, stereotypes and stigma associated with disabilities.
Disability as an issue has only recently become a common concern. Only a few countries have enacted legislation on the rights of persons with disabilities and comprehensive action plans, regional, national or local, are exceptional. Even in those countries where such laws and plans exist, persons with disabilities have been hardly in a position to contribute to the problematization of areas, at best we have been consulted on ready frameworks. Existing democracies, more or less functioning on the grounds of a social contract tradition, do not feel the need to deal with the concerns of those who are seen as lacking the capacity to be and to act independently and rationally, as societal cooperation in this tradition is based on mutual adventages of parties of approximatly equal power. What is adventageous, in the framework of the social contract tradition, shall be decided by contractors as independent actors of relatively equal stature, thinking rationally. (A good critique of the Rawlsian approach can be found in (Nussbaum, Martha C. (2006). Frontiers of Justice: Disability, Nationality, Species Membership. Cambridge Massachusetts: The Belknap Press of Harvard University).) Consenquently, the concerns of persons with disabilites as perceived by themselves, have become common concerns only accidentally.
The problems with inclusivity of the current public sphere are obvious. Accessibility and reasonable accommodation are still goals to be achieved.
Conventional consultations with persons with disabilities will be unlikely to bring about the needed change in the nature, attitudes and interactional dynamics of the existing democratic public sphere. And without such change people with disabilities remain excluded, albeit at a different level of exclusion. Consultations with disabled people's organisations only will not create broad enough consensus in society at large on what needs to be done to end exclusion and promote full inclusion and equality. In a broader consultation with all the stakeholder groups there is no guarantee that people with disabilities' agenda will substantiate the problematization on disability. Tokenism in such broad consulations is so typical that one needs to believe there are systemic causes for tokenism. I submit that because of the historical deprivation and power imbalance, more powerful stakeholders do set the agenda and the rules for discourse. In this process powerful stakeholders stakes are mistakenly defined as rights, forgetting that rights are to be asserted by the powerless to empower them to end exclusion. The most bizarre, though not at all exceptional example I know of is the Social Care Act in my country, which lists the regulation of physical and mechanical restraint in psyhiatric institutions among the rights of the user.
Isn't there a way out? In my opinion a multi-level deliberative approach may be successful. Deliberative democracy has a number of techniques which, if employed properly, can ensure both the leadership role for people with disabilities in the societal problematization of disability and the broadness of the societal discourse needed to create the necessary ownership in society at large.
What is deliberative democracy?
"Deliberative democracy rests on the core notion of citizens and their representatives deliberating about public problems and solutions under conditions that are conducive to reasoned reflection and refined public judgment; a mutual willingness to understand the values, perspectives, and interests of others; and the possibility of reframing their interests and perspectives in light of a joint search for common interests and mutually acceptable solutions.
It is thus often referred to as an open discovery process, rather than a ratification of fixed positions, and as potentially transforming interests, rather than simply taking them as given. Unlike much liberal pluralist political theory, deliberative democracy does not assume that citizens have a fixed ordering of preferences when they enter the public sphere. Rather, it assumes that the public sphere can generate opportunities for forming, refining, and revising preferences through discourse that takes multiple perspectives into account and orients itself towards mutual understanding and common action.
Deliberative democracy in its predominant usage today means expanding the opportunities of citizens themselves to deliberate." (Carmen Sirianni and Lewis Friedland, http://www.cpn.org/tools/dictionary/deliberate.html)Study circles of people with disabilities deliberate on what shall be on the community's agenda to dismantle disability-based exclusion. Then citizens' juries with participation of experts with disabilities formulate recommendations on law and policy making. This can be followed by a broad and open consultation, making use of accessible information technologies, on the issues identified by the study circles. A deliberative poll shall accompany the broad consultation. This poll shall give an evidence on how members of the community at large change their attitudes after being informed by the expertise coming from the study circles and citizens' juries. This then can be used as an evidence base for and by the law and policy makers.
This process is inherently empowering and contributes to capability development both in the communities of people with disabilities and in society at large.
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